Monday, January 28, 2008

F is for Forward, as in "Paying it Forward"

I had to blog again today....and I'm such a hypocrite because I often accuse DH of not being able to do anything in moderation...and I tend to blog twice in one day, and not again for 7 days...HA!

Long story...short version. If you get a dx of Fragile X Syndrome and you live in NJ and you want to talk to a parent....I'm the first point of contact. I've done it for a few years now. I got to a point where I am comfortable talking about FX, my kids with FX, etc....yet I still remember how mind-numbing the process was for me....from October 1999 when Matty was diagnosed until maybe 18 months was all I thought about, read about, spent time times into the middle of the night.

So, when I get a call from a newly diagnosed family, my heart goes out to them and I try to give them what they need....other parents near by where they live, information about school, therapies, etc....

In October...remember my 13 day fever of unknown origin? Well, that's when I got my first call from a woman who's son was recently diagnosed. She was lost. I felt such deja vu. I talked with her, but I had to put her off b/c I was too sick to talk. Thank goodness she didn't give up on me...she called me a couple weeks later, and we talked. Then we talked again. Then the Holidays came, and I didn't hear from her, so I figured they were settling in to their dx. Right after the new year, I did hear from her again. She asked me if she and her husband and their kids (in addition to the boy with FX, they also have a typical daughter, a few years older than the boy) could come to our home and meet us.
I have to admit, I was a little taken aback. Not that I didn't want them in my home, but just nervous about what they thought we would tell them in person that was different than what I was telling her over the phone.
I was so wrong. They came over for a couple hours yesterday. It was some of the nicest time we've spent with other parents who have children like ours. Culturally, we are worlds apart. They are much younger than A and I, their older child is the same age as our youngest child...

But then there's this thing that happens....when your CHILD gets DX with any kind of DX that changes EVERYTHING you dreamed of for your child up to that point.... and it bonds you to others who share that same path in need company on your journey.
There is comfort in just being in the same room as people going through the same struggle as you.
This family was so grateful. They truly have no idea what they are up against. See, when we got our diagnosis, it sort of filled in the blanks for us...we traced it for generations going back, once we knew what to call it and how to test for it.
This family has one one else. Both parents are one of many children in each of their families. They have many nieces and nephews, and no one is affected. I cannot imagine their feeling of loneliness and isolation. I had a mom who also had 2 kids with FX, so she was my lifeline. She helped me cope on a daily basis. I in turn, helped her come to peace with it all too, as she struggled for almost 35 years without a diagnosis as to what plagued her son and youngest daughter.
I think this family wanted to see our children too, and that gave them hope. The looks on their faces went from grief to understanding in the time they were here. Plus, their son is sooooo know, A and I are honorary neurologists and can diagnose about anyone we see in public...and you ALL have issues. But we both engaged this boy with eye contact that was unbelievable...he looked at us and held the gaze...completely opposite our own boys, and a-typical to FX....FXers hate to look at others squarely in the eye!
Just goes to never know.
I'm sure this family will be in our lives for a long time....I hope we can help them in their Fragile X journey.
Post a Comment